The state’s Newborn Screening Task Force is holding a community forum to provide an opportunity for input on a variety of questions at its next meeting on Monday, March 18, from 10 a.m. to 2 p.m. at the Zilber School of Public Health, 1240 N. 10th Street, Room109, Milwaukee.
“The community forum gives families, health care providers, administrators, policy makers and others the opportunity to respond to Task Force questions and help guide the Task Force as it considers decision-making models for newborn screening tests,” said Karen McKeown, Wisconsin Division of Public Health Administrator.
The Task Force was formed last fall to advise the Department of Health Services (DHS) Secretary by May 31, 2013, on a potential structure for evaluation of newborn screening tests, and on criteria for determining which congenital or metabolic disorders should be added to or deleted from the mandated newborn screening tests in the future. The Task Force has not been asked to advise on specific tests, payment structures, sample retention requirements or mandatory infectious diseases screening.
Current state law includes six criteria for evaluating newborn screening tests: characteristics of a genetic disorder; availability of therapies and treatment; test sensitivity, ability for mass screening and cost; ways to determine test effectiveness; screening program qualities and follow-up care options; and benefits to children and society as compared with specific testing costs.
The Task Force is required to consider these criteria as it develops its recommendations and advise whether additional criteria are needed.
The Task Force is seeking input on questions such as:
• Who should be included on an advisory committee for newborn screening?
• What kind of evidence should be required for including a test?
· Should tests be done that identify disorders that do not arise until adulthood (e.g., Alzheimer’s Disease or breast cancer)?
• Should tests be done that identify disorders for which there is no proven effective treatment (e.g., muscular dystrophy)?
• Should unintended results of tests be reported to parents (e.g., carrier status for sickle trait)?
• Should tests be included whose major purpose is to inform genetic counseling for the parents?
• Are the newborn screening criteria listed in state law adequate?
• Should consent be required for newborn screening tests of proven benefit?
• Should consent be required for tests of uncertain benefit?
• Should extraordinarily rare disorders be tested for?
Those unable to attend the forum can email comments to: DHSNBSTaskForce@dhs.wisconsin.gov, or mail them to: Department of Health Services, Newborn Screening Program, Room 250, 1 West Wilson Street, P.O. Box 2659, Madison, WI, 53701-2659, and indicate if the comments should be read at the community forum.
For more information on statutes regarding newborn screening tests in Wisconsin: https://docs.legis.wisconsin.gov/code/admin_code/dhs/115.